Hi, I posted an introduction a while back in the introduction section. My name is Nelie. I was diagnosed with SCC of the left tongue in January, (1/19) had a selective neck dissection and partial glossectomy to remove the tumor (2.5 cm)on Feb 9. They removed about 1/3 of my tongue and 22 nodes from my neck, all of which were clean, making me T2NOMO. Two days after my tongue cancer diagnosis I went for a regularly scheduled mammogram and was told I had a suspicious looking mass that needed a stereotactic biopsy ( I think that was one of the worst weeks of my life ). I had that biopsy feb. 7th and found out 2 days after my tongue and neck surgery that I also had breast cancer.

The breast mass was small (1 cm) and so I chose to have a lumpectomy, sentianl node removal and radiation as treatment.

The benefits of being treated at a small hospital with one tumor board: there were not clear margins on one part of my tongue from the Feb 9th surgery but the two surgeons (ENT and breast) cooperated so I had one long day on Feb. 25 of sentinal node indentification/lumpectomy and sentinal node removal/tongue surgery instead of having to have two separate surgeries requiring general anesthesia. From this second surgery the margins for the tongue were cancer free (also my breast sentinal lymph nodes were clean making the breast cancer a nonaggressive stage I).

I was (am) being treated locally by a local ENT with experience in doing cancer surgery and at a brand new radiation medicine extension of Roswell Park cancer institiute in Buffalo that is located at our local hospital. This brand new extension had a radiation oncologist, who has since left (rumor has it was fired) who said he didn't think I needed radiation after my surgery. He apparently formed this opinion after consultation with the other radiation oncologists at Roswell Park but may not have presented all the info. in my pathology report.

Anyway, my ENT surgeon expressed some concern about this and at his urging I decided to request a second opinion. I chose Dana Farber in Boston because I am originally from that area. I went there for the second opinion on March 9th, which should have allowed enough time for the breast surgery to heal. However, the breast incision became infected almost right after surgery and, a week and 1/2 after surgery (and the day before I was heading to Boston) had to be drained. It is now being cleaned and packed daily and will probably not be healed all the way over for another three weeks or so. So the trip to Dana Farber was right after all this (tiring) and we drove through a nor'easter to get there (thank God my husband is a steady driver)!

Anyway, to make a long story short(er), the folks at Dana Farber pointed out I had certain risk factors for recuurence depsite being stage II including perineural invasion, a fairly thick tumor (1.5 cm), and something else which honestly I am forgetting right now, which indicated I should have radiation. Our new facilty has IMRT and they said with IMRT I should be able to have my parotid glands spared somewhat IF the programmer knew how to do that. They said it would really require an expert programmer to do it. They said I would need both sides of my neck radiated. They also suggested concurrent chemo but acknowledged this is not the standard for Stage II although they believed it would have definite benefits in terms of reducing reccurence.

When I came back here I met with a rad. oncologist from Roswell Park who has replaced the guy they let go, who said (after talking to dana Farber) they had re-evaluated my case at Roswell Park and agreed I needed radiation and that they could use the IMRT radiation to spare my right parotid gland. However, they are saying I don't need the right side of my neck (the right lymph nodes) radiated since no cancer was found on the left, it is very unlikely there would be cancer on the right side. They are radiating both sides of the mouth.

Also, he disagreed about the chemo recommendation. I posted about this elsewhere but the issue is that of the two phase 3 experiments testing the benefits of combined chamo and radiation versus radiation alone, only one (the one done in Europe) included people like me--high risk Stage II--the other used only Stage II and IV (they gave me copies of this research to read at Dana Farber. The articles are in the May 204 New England Journal of Medicine if anyone is interested). Anyway, the one that did use people like me didn't break out the results by stage (the trained statistician in me suspects this is because they simply lacked the statistical power to state that the effect was statistically significant even if it looked like it was there if they did comparisons for each subgroup by Stage but who knows). Apparently right now chemo with radiation is standard for high risk stage II in Europe, bsaed on this research, but is not recognized as the standard in the States according to my radiation onc. here.

Anyway, for me it may be a moot point because with a deep open incision that is slowly healing from infection, I cannot have chemo until it is healed. And it probably won't be healed by the time I start radiation (which I hope will be April 4th--I have to have two teeth pulled Tuesday and then that needs at least a week and 1/2 to heal). I am more concerend about the fact that at D-F they said I definitely need both sides of my neck radiated and they disagree about that at Roswell Park. These are both National Cancer Centers! I don't know how much of an issue I should make of this--I want to keep my parotid functioning (which they say not radiating the right side will help accomplish, though the folks at D-F clearly said there were other ways of sparing the parotid) but I don't want to go through all the trials of radiation and then find out it didn't protect me from a recurrence because they should have radiated a spot they missed.

I am also just exhausted from fighting the breast infection, the grueling drive to Boston and back, getting the breast dressing chnaged every day, and trying to get things set up for radiation (seeing the dentist, finding people to be with me when my husband has to be at work, etc.) I also will be being treated at a facility where I will be the first oral radiation patient, even though the radiation folks who are there from Roswell Park are not new to this, and they are cehcking all the calulations etc. for the radiation, there will be no nurses with handy tips about what has worked for other people.

Please --any help telling me the day to day things I might need to knwo to get through this will be of great value--anything will be of help!

Also I'd welcome anyone's thoughts on what I should do about the differing opinions (from two highly rated cancer care centers) about whether my right neck needs radiation.

Nelie

Hi Nelie,
Just bringing this to the top for other posters with information for you.
Take care,
Minnie

Thank you Minnie! I know it was a pretty long post so I'll wait hopefully for others who have the time and patience to read it.

Nelie, I'll try to be brief. Re: Radiating one or both sides of the neck. I would pursue both sides as this disease is very aggressive and there is often only one chance to kill it. I prefer to use every possible means to get it the first time and not leave any chance that the disease you already know about comes back because you didn't do everything possible to kill it and get it out of your body.

On the subject of day-to-day stuff, there are many tidbits of information available on this forum. Doing searches for specific questions or issues can help to answer a lot of questions. Of course, you can always ask here and someone will have an answer. Generally, radiation is cumulative in its effect and is easy in the beginning but gets more difficult as you proceed. I found the chemo to be very easy to tolerate. I had a feeding tube and unconditionally recommend it to all patients. In fact, I think it should be mandatory. However, there are a lot of patients here on this forum who didn't have a peg and made it through without one. Hydration and nutrition is critical to recovery and the peg helps that considerably. I lost my voice and the ability to swallow my own saliva due to the rad treatment. I also had oozing sores on my neck for weeks from the rad. There are some on the forum, though, that didn't have either issue. We are all different and react to the treatment differently. Try to bulk up with eating before rad/chemo as I lost 25% of my body weight (50 pounds) even with a peg.

Hopefully, this will help a little. Suggest you take it one day at a time. You can get through this. Many have and look back on the experience with a certain amount of laughter. A positive attitude is one of the best things you can bring to the party. Good luck and you will be in my thoughts.

Thank you Kirk. I am going to email the radiation oncologist from Dana Farber and ask him what the risks are, as he sees it, if they do not radiate the lymph nodes on both sides and I'm going to ask my radiation oncologist here to explain to me again why he thinks it's OK to do that. As I said, he is a very experienced radiation oncologist as well from one of the 21 cancer care centers, so I do think his informed opinion is worth something.

I also need to ask more about the PEG tube. At Dana Farber they said it was something they would only require if I was doing rad along with chemo (which it looks like I won't be able to do because I have this other surgical incision still healing from infection).

Fortunately I was already "bulked up" before I was diagnosed. It was right after the holidays and I wsa actually at my heaviest weight ever and wondering how I would ever manage to lose 40-50 pds. Heh. Little did I know. I've already lost about 25 pds since then between the initial anxiety over two cancer diagnoses, two tongue surgeries and the post surgery infection from the breast surgery. If I lose another 50 from here I'll be looking very skinny but I think I would still be a little above the technical "underweight" line. What a way to go on a diet, huh?

But I am hoping I won't lose that much--mainly because I want to recover from the radiation as quickly as possible and I'm sure that must happen faster when you keep up your hydration and nutrition up all the way through. That's why I want a PEG. The thing is, after I recover enough from this rad. treatment I still need to have 6 weeks radiation for the breast and I'm *hoping* that can happen before my fall semester starts (mid August), which means it would need to start around the first of July, which will be about 6 weeks after this rad. treatment ends.

From what I'm reading here about how long it takes people to recover, that goal may be pushing it. But I figure having those goals and an optimistic attitude might help me through--it will certainly make me more careful about trying to staying well-nourished anyway.

Thanks for the encouragement, keeping me in your thoughts, and the reminder to take it one day at a time. I'm sure I'll need that along the way too!

Neli -
It's so hard to be brief with so much going on. Anyone on this board will tell you I'm long winded (as would my clients - hmmmm.....interesting coicidence. And my friends. And my co-workers.) ANYWAY. And my family.

I had SCC, Stage II on the left side of my tongue. No sign of spreading to the neck. DF and MGH both had tumor boards I saw. They both argued extensively about the neck - dissection, radiation, nothing. DF's final recco was surgery on the tongue, rads including entire neck, and chemo (can't remmeber about the neck dissection). MGH said just rads. I cried all weekend because they didn't match up.
I asked each doc to reconcile to each other, and I would recommend you do the same.
DF didn't budge b/c "when you choose a less aggressive approach and the unimaginable happens to that individual, you never forget their face." MGH reconciled up to DF - surgery, rads, and chemo if I wanted.

I didn't do chemo, but looking back I wish I had for no other reason than comfort. Knowing this feeling and that your tumor is deeper, I'd personally do chemo. I suspect DF recommended the "chemo-lite" for the tongue, which makes the cancer cells more suseptible to the rads. With the complication of an additional cancer, I could be off-base.

Because your tumor is so deep, I would also inquire about bracheytherapy. DF does the "wires", which they told me isn't as solidly tested as the seeds, in terms of dosage. The seeds "specialist" went to MGH late 03, early 04 (had worked at DF for 15 years). If you'd like me to go into more detail on the phone (you don't have to talk if it's difficult - beleive me, I'll babble on enough for both of us).

Sabrina

Nelie -

I just sent you a private message aside from the above, which the newcommers occassionally miss. Look at the top of your screen where it says "You have X unread private messages" and click there.

Sabrina

Sabrina, Maybe I've been unclear. I already had surgery on the tongue and they got clean margins around the tumor (the second time around). They did take a lot of my tongue--about 1/3 of it--but I'm speaking pretty well with just a slight slur when I make "s" sounds (eating is another matter, I have to stick to soft or moist things though I'm seeing a speech pathologist who may be able to help me with that).I'm confused about the brachytherapy. What would they be focusing the radiation in the wires or seeds on if the tumor is excised? I thought that was just used to shrink tumors before operating.

Yes, DF recommended "chemo lite" just to make the radiation more effective but I really don't think I can have it while I have another serious surgical wound healing from an infection. I might be able to have it for the last 4 weeks of treatment , though. I am still going to ask about that. What I'm most concerned to get some agreement on is what part of my neck needs radiating. I am in Upstate NY and I really am not seeing a way I can get treatment at D-F easily and it seems as though, when there is a facility being run by Roswell park just down the road from me, I shouldn't have to be wondering if I should. I just want them to agree more!

Nelie,

I had brachytherapy at the end of my radiation treatment (I had surgery before radiation, with clean margins and no node involvement). FYI -- Sabrina and I have the same radiation oncologist. In my case, I believe it was done to compress the final necessary doses into a shorter time frame and to further concentrate those doses in the areas that were felt to be most at risk.

Cathy

Nelie,

This one is kind of hard to follow because of length, but....Radiation to one side has had less than positive results for a few of our members. I am a bit surprised that, in this day and age, it is even an option. The only way to definitively determine the presence of cancer is by laboratory examination of tissue samples. It seems that you had the neck dissection on the left side and that, since they were clean, they(Roswell) are assuming the right is clean. I am having trouble with this even coming out of a radiation oncologists mouth. I understand no radiation in some cancers, but not half a job if radiation is warranted. I am no doctor, but this does not add up with what we have all seen here. As for chemo, it has been shown to reduce the risk of a reoccurrence and extend survival times. Keep in mind that I tend to believe that we overuse the word reoccurrence. It is more likely a reappearance since it was probably missed the first time through. Do yourself a big favor, be aggressive now. The second time is even less enjoyable.

Glenn